The acronym C/SI stands for consumer/survivor initiative, as loosely defined by the Ministry of Health when these organizations were originally funded. Over time, the governance of these groups has changed – some remain completely independent and consumer-run, with their own reporting relationships with their funding LHINs. Others have been absorbed by and become peer support programs within mainstream mental health service provider agencies, with varied levels of autonomy and peer control. The term C/SI is applicable to all of these, while Peer Support Organization or PSO indicates governance solely by and for people who have lived experience. These organizations operate on the principles of recovery by providing self-help and peer support, and some of them operate businesses using the community economic development model.
Language is tricky and can be very fluid, especially in the mental health field where terminology can become “labels” and labels are subject to misinterpretations.
The term “consumer/survivor” was coined decades ago by people with mental health issues to describe their own sector. The term has fallen out of favour recently, probably because it has always held somewhat different meanings for different people. To some “consumer” means “customer” and expresses the wish to be viewed and served by the mental health system as such. To others, it suggests a smart shopper who can choose the services they want; while this is likely what everyone would want, it is a privilege few enjoy. To still others, “consumer” suggests a negative notion of “always taking in and giving nothing back”.
Similarly, the word “survivor” can be loaded in this context. To some it may mean they have survived the illness. Many use it to indicate they have survived some of the oppressive aspects of the mental health system, or of a society that is hostile or unsupportive toward people with mental illness.
We use the term Consumer/Survivor Initiative simply because this is how the Ministry of Health and LongTerm Care categorizes these organizations within the list of functional centres that it funds. OPDI members can be classified as CSI’s whether they are independent organizations or peer support functional centres within a mental health treatment setting. We still sometimes use the words “consumer” or “survivor” depending on the context of the conversation or our knowledge of how individuals we interact with like to describe themselves.
Lately the term “Persons With Lived Experience” has gained preference, and is often shortened to PWLE in documents. When OPDI uses the term PWLE, we are referring those with direct and personal lived experience of having a mental health issue, whether diagnosed formally or not.
In some places, PWLE are described as “Users” – while this is meant to denote “users of the service” it has other connotations that some may find objectionable. In some contexts, such as program delivery or activity planning, and in completely peer-run settings, the term “participants” is most appropriate. For service providers, the term “client” is common, although it is less appropriate for a peer supporter to use that term. It is never appropriate for a peer supporter (or anyone who is not a clinician) to call anyone a “patient”.
In all cases, it is important to recognize that everyone has the right to self-label. Therefore, we should make the effort to ascertain and use whatever “label” or term is preferred by the individual we are working with.
OPDI defines peer support as follows:
Peer Support is a naturally occurring, mutually beneficial support process, where people who share a common experience meet as equals, sharing skills, strengths and hope; learning from each other how to cope, thrive and flourish.
Formalized Peer Support begins when persons with lived experience who have received specialized training, assume unique, designated roles within the mental health system, to support an individual’s expressed wishes.
Specialized Peer Support training is Peer developed, delivered and endorsed by Consumer/Survivor Initiatives*, Peer Support Organizations* and Patient Councils, and is rooted in principles of recovery, hope and individual empowerment.
* Consumer Survivor Initiatives and Peer Support Organizations are community-based, self-help organizations run by and for consumer/survivors.
Please Note: The above definition of peer support was developed through the focus group/workshop/piloting process of creating the OPDI Peer Support Core Essentials™ Program. A draft definition was workshopped with our members in 2010, further refined by a member working group, then adopted by electronic vote of the membership. We welcome and encourage you to use or reference this definition or provide links to this page, providing that OPDI is credited and the definition is provided unedited and in its entirety. This definition should not be co-opted by shortening it or changing its language.